Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be worried about daughters mysterious illness

167 replies

Whatisgoingon16 · 22/08/2023 17:31

She has a doctors appointment tomorrow but we are all absolutely stuck. Hoping somebody here recognises what is going on.

My daughter is 16 and physically has always had some problems. Nearly died of an asthma attack as a toddler, also had mono and got sepsis from it as a baby. Very close to death.

Physically she is thriving now, slightly overweight but so am I, think she gets that from me as she loves her veg.
She has been on fluoxetine for three years now.

For the last few weeks she’s been seemingly hit like a truck by this mysterious illness and none of us have any idea what’s going on. Seems to be getting worse, especially in the past few days.

She has been saying she feels lightheaded and tired all the time. Sleeping much more than usual, hours after going out or just from light activity.
She said she gets headaches, light stomachaches around under her ribs and aching legs and arms. She has lost some weight, not a significant amount, I think it’s because of her appetite going down.
She has now started to throw up, especially in the morning when she said she feels worse which made me wonder if she could possibly even be pregnant but I am not sure as she is not in school (starting college) and only ever goes out by herself when she wants to get some clothes/treats. Has no boyfriend and I’m the one who picks her up and she seems fine.

All of this is concerning enough but it’s when I noticed she was constantly eating salt (putting it on everything, eating from the salt shaker) and drinking water I took her to the doctor as diabetes runs in her dad’s family.

Blood test came back fine, no thyroid problems either (my mother and sister have issues) assuming everything else is okay as they haven’t said enough but it did come back as slightly low iron. No anaemia, just slightly low so she is on a small dose of iron tablets.

Now we are thinking perhaps pcos as it runs in the family as well, she did say her hair has been thinning.

Help would be appreciated we are flabbergasted.
She has changed as a person as well, so angry all the time. Said her vision is wavy and she sees patterns. Her depression has become unbearable for her just always in bed.

When I talk to her about her day or what she does she takes about five minutes to even come up with a sentence. I’m worried about my daughter, she said it’s hard to think.

I am going to the doctor as I mentioned with her tomorrow and I want to know some questions/tests to ask about. I’m bloody worried

OP posts:
Thread gallery
8
Outonaschoolnight · 22/08/2023 19:13

Inmy40 · 22/08/2023 17:41

Addisons disease causes salt cravings and many of those symptoms. Her cortisol level needs to be checked.

I was also going to suggest Addisons. This is very similar to how I was pre-diagnosis. Mine went on for a year until I ended up in A+E so make sure you keep pushing for an answer.

Simbaiamyourfather · 22/08/2023 19:19

I've just been through something similar and it turns out I have ceaolics! If she hasn't already might be worth having a blood test and then cutting out wheat and see if that makes a difference. Google ceaolics symptoms and if you have Facebook join the support group on there, if you read through other people's stories they all sound quite similar.

Purpleraiin · 22/08/2023 19:22

I was checked for addisons and it was done through a blood test, then an injection followed by another blood test all in one morning at the hospital. Routine bloods picked up nothing for me but this test did.

Have you got a blood sugar monitor? I have multiple illness' with all those symptoms present but the one that stands out for me is hypoglycemia and carries most of those symptoms so it may be worth testing her sugars.

Brunts12 · 22/08/2023 19:43

Fluoxetine withdrawal?

goodmother90 · 22/08/2023 20:44

I have chronic gastritis (13 years) and the symptoms your daughter has sound very very similar. I have also been diagnosed with POTS this year (I've had it for many years), which I'm sure is caused by my untreated gastritis. Many gastroenteroligists have tried to tell me I dont have gastritis, that it cant cause headaches and all those other symptoms. At the end of the day the only things that are keeping my chronic nausea and other symptoms under control are natural gastritis medications that I bought on amazon. I'm still waiting for proper treatment but I've been able to get my life back and feel amazing.

Lilolilibet · 22/08/2023 21:00

Whatever else is going on could be masked by withdrawal syndrome symptoms? Maybe try going back on the old antidepressant to see what goes away - it could be key to getting the right help.

Dogsaresooomucheasier · 22/08/2023 21:24

Bloods wouldn’t show everything the GP would have requested specific tests based on what they were checking for. Download the NHS app and look at her results and you’ll see what aspects are high/low etc may give you more idea.

keep pushing - definitely get and eye test done and ask for more bloods and do a pregnancy test to make sure - you never know .

good luck x

Localher0 · 22/08/2023 21:38

As a PP said - maybe coeliac disease. If you go to isitcoeliacdisease.org.uk/ there's a little online quiz. My DD was unwell for a few years before it was found when she was 16. It's a simple blood test but she has to be eating gluten for it to be effective. Good luck

RunnerDown · 22/08/2023 21:57

Fluoxetine can cause something called hyponatraemia - which is low sodium. The symptoms are similar to those your daughter is describing. I would expect sodium to be measured on any routine blood tests. Were the blood tests done before her recent symptoms started or more recently. I would ask about this. Might be worth getting the test for sodium repeated.

TinkerbellefromYorkshire · 22/08/2023 22:03

Please don't have a private chat with the GP.. she's 16.. not a child.. she needs to be in all conversations.
Could be Fibromyalgia there is over 100 side effects ( Google) including migrains/ sickness/ pains everywhere/ dizziness etc etc.

AppletreesAndHoneybeesAndSnowWhiteTurtleDoves · 22/08/2023 22:05

Weight gain, pain in limbs, thinning hair, symptoms that mimic PCOS. Could be Cushings, would definitely ask for cortisol to be checked. Is she thirsty a lot?

Whatisgoingon16 · 23/08/2023 12:14

Hi all thank you so much for the replies - I will reply back to individual comments just busy ATM. Dd very irritable today ☹️

OP posts:
PinkFootstool · 23/08/2023 12:21

Chronic migraine needs to be considered by the sounds of it.

Visual disturbance, vomiting, dizziness, lightheaded, stomach pains, depression, food cravings (for me it's sugar, carbs and salt so I usually head for a cold full fat coke, salt and vinegar crisps and bread), cognitive impairment during an attack.... All horribly familiar to a migraineur!

atthebottomofthehill · 23/08/2023 12:23

What were the ferritin levels? I felt like this when my iron was "normal" but what's normal for one is not normal for another. I had an iron infusion and problem solved.

Is anxiety an issue for her? I have also felt like this when extremely anxious. It's not always obvious it is anxiety though.

Whatisgoingon16 · 23/08/2023 17:17

Just got back. She has further blood tests in September x

OP posts:
BeverleyMacker · 23/08/2023 17:21

Glandular fever?

Nopenopenopenopenopenope · 23/08/2023 17:49

How low is "slightly low?" I'm assuming you mean ferritin. If it's under 30 NICE guidelines changed a year or so ago, and that's considered absolute iron deficiency which can cause symptoms that are pretty much the same as anaemia.

sentinent · 23/08/2023 18:25

Needs cortisol checked.

Wishitsnows · 23/08/2023 18:31

September for blood tests, that’s not a great service. Hope your daughter is feeling ok about the appointment

Un7breakable · 23/08/2023 19:00

Addison's disease would fit a lot of these including the sudden worsening. I'd mention it to GP as it's reasonably rare so not always something they think about.

RandomMess · 23/08/2023 20:18

I wouldn't be happy with a wait like that tbh

Whatisgoingon16 · 27/08/2023 22:51

Hi.
Quick update after getting to replies -
I am phoning the GP tomorrow for her to be referred to an endo because she has told me that her pubic hair has been falling out and now has bald patches ☹️. I can almost see how dizzy she is she is just sleeping all the time.
Ruled out:
Diabetes
Thyroid issues
Anything related to COVID19
Sleep apnea
Kidney problems
She has stopped eating gluten at my advice that it could be a possibility for the past 3 days but no change so far. She isn’t eating much in general.
I am going to ask GP about doing a ‘tilt test’ for pots, though she has said her heart seems fine I think it should be officially ruled out.

OP posts:
Whatisgoingon16 · 27/08/2023 22:52

Also she has College very soon so the quicker this is sorted the better. I wonder if it’s stress related myself

OP posts:
ImABox · 27/08/2023 22:58

@Whatisgoingon16 the tilt table for pots is beyond the scope of a GP. That is something she’d need to see a cardiologist for first and the cardiologist will refer her. You can do a basic one at home for her. Get a blood pressure machine and get her to lie down. Do her heart rate and blood pressure and then stand up and do it again and then do it every minute until 10minutes.

yoi say you’ve ruled things out, is that the GP ruling it out or you thinking not likely?

Swipe left for the next trending thread