15yo dd has lost so much weight, I'm worried

[Ddhealthworry]

As per the title really, she has been feeling sick every time she eats anything sweet for a while now.

She has lost probably about 2-3 stone in the last 3 months (I don't keep scales in the house so not sure exactly).

She is eating, definitely, she isn't making herself sick, I'm 100% sure of that.

Her mood is quite low, she is really pale, the weight loss is very concerning, she feels sick when she eats anything sweet, she has absolutely horrendous periods, but has been on the pill for around 9 months (could this be the reason for the weight loss).

We are waiting for some blood tests to come back next week, but I have stupidly, spent the evening googling and am now terrified.

I'm hoping the test comes back and actually finds something, as mad as it sounds, just so it can be fixed, if it shows up with nothing then where do I go from there? What further tests should I be asking for.

Any help or words of advice or thoughts would be so appreciated.

Haemochromatosis It is quite rare but she did loose weight rapidly. Her iron was high though . It did take a while to diagnose .

hopefully if more tests are being done you will get an answer soon .

Did they only do a finger test for diabetes ? Not a full test that measures blood levels over a period of time ?

keep pushing btw . 🤞

Fantastic. That was the 2nd test I took to be diagnosed. 1st was CRP blood test, 2nd stool sample, 3rd colonoscopy and the final one MRI to find out exactly where I had inflammation. I have rib pain too.

Not necessarily, as some people with small bowel only Crohn's don't get particularly raised calprotectin. But would make it much less likely.

Maybe some type of inflammatory bowel disorder? Like Crohn's, IBS, diverticulitis or maybe gynaecological like endometriosis? Fingers crossed you have an answer soon. Try not to worry, easier said than done though!

Definitely get every test done for gut/colon/digestion issues.

BUT if they come up with nothing do consider that there may be a mental health element. I don't mean an eating disorder but extreme hypochondria with severe physical symptoms.

You mention you became disabled lately. After a young relative died very suddenly in their early 30s after a misdiagnosis of what turned out to be cancer, I developed lots of genuine medical symptoms and felt absolutely horrific for a long time. But I was basically mentally unwell and it was showing itself physically which then made me complete obsessed with the fact that I was also seriously physically unwell and it was being missed. This was in my 20s.

So of course rule out everything first but some psychological support might also help.

Thanks for all of the advice on this.

Just to update you all - after getting all the tests and scans etc done its been confirmed she has endometriosis. That was causing inflammation of her gut and that's what was causing all the trouble and weight loss.

She will have to go in for some surgery to remove a part where its particularly bad, and they are doing to change her into a different pill, see if that helps too.

At least we have answers now, finally. It was a bloody long road, I appreciate all of your help.

I’m so glad you got to the bottom of it. Best wishes to her, I hope the surgery helps.

So glad you have a diagnosis. I really hope she gets the treatment she needs quickly.

Hope it all goes smoothly.

What an amazing mum you are being so relentless about getting a diagnosis.

Thank you, haven't been feeling like the best mum at all watching her suffering and not being able to help, but we are definitely getting there now finally.

I really do appreciate all the help.

Thanks for updating. I'm really sorry to hear your daughter has endometriosis. It's a horrific condition. I have it too.

A few things helped my pain, including: eating organic (extremely difficult and expensive but it's had by far the biggest effect), drinking green tea (contains a substance that prevents the formation of new blood vessels, which prevents endo lesions spreading), ginger capsules (anti-inflammatory), and mint tea (not sure why but contains phyto-oestrogens).

N-acetyl-cysteine has been shown to reduce endo pain and cysts. (Personally it hurt my gullet, but it did help.)

Dairy, gluten and meat have been shown to be bad for endometriosis. (Irrelevant to me as I don't eat them anyway)

Also apparently melatonin is beneficial but I've not tried it yet.

Obviously these things aren't treatments, but they did substantially help my pain so I thought I would share in case it's of interest. Since endo is progressive, in my opinion it's worth doing what you can to help yourself.

@Ddhealthworry so sorry to hear your daughter has this horrible condition 😔 Just hope the surgery and medication now will help her. Sending lots of support to both of you ❤️

Your poor daughter op - how awful for her xx

@slore thank you so much.

I'm going to be spending the next few days doing all the research I can so that's all really helpful.

Dd is happy that we know what's wrong now, but a little scared about the op she needs, and also a worried for the future as she has always been dead set on becoming a Mum one day and is scared it may not happen now.

It's a lot to take in since she's only just turned 16, but at least we know now, and at a minimum we are getting the inflammation sorted so she can eat properly again.

Oh bless her. My 23yo has suspected endometriosis, her scans were negative but nice guidelines say as she textbook symptoms she should have operation next so she’s on the waiting list for this. I hadn’t clocked that it could be connected to her weight loss, my Dd is also very thin.

hope your Dd gets some treatment soon…are they not trying to fob her off with the pill?

@CormorantStrikesBack the endometriosis has caused an inflammation in her gut, so if your dd is having problems with food, feeling sick etc it's definitely worth getting looked at.

They are focusing on sorting the inflamation first for my dd as that could potentially lead to other issues.

Yes she feels sick all the time so doesn’t eat much. She also has ehlers Danlos syndrome which is a connective tissue disorder so I’d put the sickness down to her digestive system tissue been affected by that but it could be endometriosis I guess. The doctors are bloody useless and don’t have an opinion on anything. Her GP didn’t even know EDS could affect the gut.

how are they looking at reducing the inflammation? Dd can’t take ibuprofen type drugs. I googled the N-acetyl-cysteine which someone here mentioned but she can’t take that either because she’s on blood thinners for life after having blood clots in her lungs.

she could maybe try ginger capsules? I know she can’t take turmeric because of her clotting issues.

Well done OP, and although you say this has been long, Im amazed you found out so quickly what was wrong, its been a couple of months hasnt it? Im amazed she got seen by the right people and had scans etc so fast.

I suppose at least something is working in the NHS or was this private?

Just googled, she can’t take ginger either 🙈

Omg OP, I'm shocked, I didn't realise endometriosis could result in such symptoms and I don't think I'd have expected this in such a young girl. Bless her and you, this must have been so stressful. It's such a nasty condition, I really hope your DD feels better soon. Sending love ❤️ well done for persevering for her, you sound amazing. xx

I was contemplating going private, but I didn't need to in the end so it's all been on the NHS. Apart from the doctor we first saw I really can't fault them. That's numerous GP and nurse appointments and tests, a dietician (she's now been signed off from) a scan and she has a consultant appt all in about 3 months.

You're right though, it feels like forever, but it has been relatively quick in real terms. We have been lucky.

I think DDs age, plus the drastic, unexplained weight loss put her on the emergency lists. We did have to travel to one of the larger hospitals, it would have taken forever at our local one, but worth it to get to the bottom of what's causing this.

We have a video appointment with a consultant next week as well to go over all the options and move forward with whatever meds she needs, discuss the operation and all that stuff. I'm not really sure what the plan is yet.

When the inflammation gets sorted then that's a major win for the shorter term symptoms, and she will be able to eat properly and feel well within herself again.

The endometriosis is something I'm just learning about properly at the moment. Unfortunately it looks like it's going to significantly impact her life. At least we know what she is dealing with now though.

Thanks again everyone.

Have to say that’s an amazing service from the nhs. Dd waited a year for a telephone consultation with a gynae dr who tried to discharge her saying they didn’t think it was endometriosis (she did have a scan while waiting for the gynae appt). Dd argued the toss and got a second opinion face to face and went armed with the NICE guidelines. They agreed to an operation and now she waits. No dietician, no discussion of reducing inflammation. 🤷‍♀️. Hate this postcode lottery, though glad your Dd is getting good service OP.

I'm pleased to hear you got a diagnosis which at least gives you a starting point. I think the average time for endometriosis diagnosis is a ridiculous number of years as it is for PCOS which my DD was diagnosed with at a very similar age. Good luck to your DD, it's not necessarily going to be an easy journey but there's a starting point now which is so much better than being in the dark.