To be worried about daughters mysterious illness

[Whatisgoingon16]

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

This .

https://cks.nice.org.uk/topics/addisons-disease/diagnosis/investigations-suspected-adrenal-insufficiency/

They won’t have done early morning cortisol as standard. I was misdiagnosed for 2 years before being diagnosed with Addisons / adrenal insufficiency. This website may help. Addisons and secondary adrenal insufficiency have different causes (secondary is caused by pituitary issues or steroid use, Addisons is caused by the adrenals themselves not working) but the end result is the same - no / low cortisol. Potassium is often elevated in primary Addisons but completely normal in secondary which is often misunderstood by specialists as they will look for high potassium which is only associated with Addison’s, not secondary. Both are life threatening and require the same treatment, some with Addisons require fludrocortisone as well as steroids.

https://www.addisonsdisease.org.uk/emergency

There is also this Facebook group which is full of helpful people and people going through very similar things - you don’t need a diagnosis to join, lots are in the early stages of diagnosis

<a class="break-all" href="https://m.facebook.com/groups/175948922471395/?ref=sharem.facebook.com/groups/175948922471395/?ref=share&exp=9594" rel="nofollow" target="_blank">https://m.facebook.com/groups/175948922471395/?ref=sharem.facebook.com/groups/175948922471395/?ref=share&exp=9594

She def needs early morning cortisol test - it’s it’s around 8-9am. Please try and get her this, OP. I looked up Addisons symptoms and your DD’s match them inc the falling out of the pubic hair. Go private if you have to, bloods aren’t too pricey to get privately (I looked recently for DD but in the end we got it sorted in nhs but it was a follow-up, not emergency).

I've just done some home blood tests. They're very easy.

This one's only £45.

Please be very wary of doing these. They’re not reliable and without a proper cortisol blood test done at 8-9am you won’t get further with a diagnosis on the nhs. (Equally avoid any saliva cortisol blood tests as these are generally only reliable / used to diagnose cushings - the opposite of Addisons / ai). We have a lot of people in the facebook group linked above who’ve spent money on these and various other tests and still get no further on as the results aren’t respected by the NHS.

Also, unless a proper cortisol blood test is done at 8-9am the result is useless. It needs to be early morning. That’s when cortisol levels are highest - in a normal person without ai issues. Doing one later in the day can’t be interpreted properly as the normal range is only known for 8-9am, it fluctuates too much as the day goes on.

Good points, @Xrays. Unfortunately the NHS-run lab (https://monitormyhealth.org.uk/) doesn't offer the cortisol test. Medichecks do instruct users to take their test before 10am, and have actually called it the "9am test".

Obviously (I hope!) these things aren't diagnostic - but it is more information for OP.

That’s ok. 💐 I’m sorry if I seemed aggressive in my response btw, it wasn’t intentional. It’s just I’m one of the main people who help people in the Addisons / ai facebook page and have learnt so much about it all since my diagnosis in 2017, I’ve had pituitary issues (tumour etc) for 20 years now and have multiple autoimmune issues as well. There is so much misunderstanding around them in the NHS.

I do hope your dd gets better soon

I do think you need to have her checked at the hospital for the other serious conditions pp's have mentioned. Nobody is telling you these things to scare you, they're genuinely worried you might lose your daughter if you wait x

OP, when I read your post, it could have been written about my 16 year old daughter. Her symptoms are identical. I'd already taken her to the doctors before reading your post because of the chronic nausea (which we had put down to anxiety), dizziness and lethargy. She had a ferritin level of 3 which was extremely low and her blood pressure was through the floor. I asked the doctor to prescribe some anti-sickness tablets during that visit and these have really helped. She's also on B12 (Holland & Barrett). After reading your post - and everyone's responses re Addisons - I booked an emergency appointment on Friday and took her this morning. She is being given the cortisol test and is being tested for coeliac. We have under-active thyroid in the family but a recent test for this showed her levels were well within normal range. She has been given folic acid today. The doctor said she should take it for one week and then have bloods done in 7 days.

I hope you get some answers. To test for Addisons your daughter will also need to have her salt and potassium levels checked. People with Addisons can't hold on to salt so it drops to dangerously low levels and potassium levels increase. This is what causes the dizziness and low blood pressure and it is incredibly dangerous.

@Whatisgoingon16 I'm not sure if anyone else has mentioned this, but I recall you said your daughter salt levels were normal which makes it look less like Addisons, BUT has your daughter taken regular doses of steroids at all - tablets or inhalers etc?

Being on long term steroids can cause secondary Adrenal insufficiency (Addisons is Primary Adrenal Insufficiency). The symptoms and treatment are similar to Addisons disease but you can still regulate your own salt levels so you don't require fludrocortisone.

I hope you've found some answers x

@Ohdofuckofdear fellow FND sufferer over here!

💯 this.

And -
Normal or low potassium etc doesn’t exclude adrenal insufficiency. Even some with primary Addisons have low potassium- this is why I was misdiagnosed for so long, they kept looking at my potassium and sodium and saying it was normal / low so I didn’t have Addisons. Actually I did, I’m one of the rare group of people that actually have adrenal glands that don’t work (primary Addisons) AND a pituitary gland that doesn’t work - so no signal being sent to adrenals anyway (secondary adrenal insufficiency). And - just to complicate things, I have also taken steroids for asthma so potentially could have had secondary adrenal insufficiency through that too. It’s a very complex disorder and hugely misunderstood by medical people.

Any update, OP? Thinking you must have the last of the results through by now.