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

I cannot stress how urgent it is that you get her tested for Addison’s Disease. She could die and as it sounds like she is going downhill I would be very concerned about this. I know she has an appointment for tomorrow but in your shoes I would be getting her to hospital.

B12 deficiency?

"Without enough red blood cells, your tissues and organs don't get enough oxygen. Without enough oxygen, your body can't work as well. Symptoms include weak muscles, numbness, trouble walking, nausea, weight loss, irritability, fatigue, and increased heart rate."

A deficiency in either of these vitamins can cause a wide range of problems, including:

• extreme tiredness
• a lack of energy
• pins and needles (paraesthesia)
• a sore and red tongue
• mouth ulcers
• muscle weakness
• disturbed vision
• psychological problems, which may include depression and confusion
• problems with memory, understanding and judgement

I don’t know if this would help. I heard somewhere that the cut off point for thyroid problems in the Uk is different in other countries.

The implication was that just because you don’t match the NICE criteria for thyroid, doesn’t mean you don’t have a problem with your thyroid. There was also a discussion about TS4 and TS3. I think it was saying they both need testing for but guidelines only suggest the one test.

I understand NICE guidelines are based on the statistics, but your Dd could be an outlier.

Im not medical and this was a long time ago and I apologise if I’m writing utter balderdash.

Might it be worth asking to see the actual result and if it’s near the threshold, perhaps pay for a more comprehensive test. I only say this as you’ve mentioned thyroid problem run in the family.

You’ve had some good ideas from other posters and I hope you find an answer soon.

She is in bed now had the further bloods this morning🌸🙏

Oh and I had requested the results for the first blood test, not very medically savvy but taking a look -
They had tested ferritin (still not sure what is)
There was a coeliac test done it says
blood pressure slightly low ?
B12 was tested as well
Good god ☹️

Ferritin is iron levels I believe.

Do the results tell you the normal ranges so you can see where they are at?

Repeating the Addison's warnings again, @Whatisgoingon16!

Addison's is a disease of the adrenal gland. Things like vitamin deficiencies and post-viral syndromes don't cause intense salt cravings.

You said DD had been eating salt on its own. She hasn't got heatstroke. The disease most likely to cause salt craving is cystic fibrosis. You would already know if she had that. Addison's is a 'rare' disease, but not all that rare.

Your descriptions of DDs symptoms are an exact match for Addison's disease, apart from dark skin patches. Has she had these, especially in or around the mouth?

Your update, when she was vomiting and fainting, matches adrenal crisis.
It may be fatal.

From the NHS page:
......
During an adrenal crisis, the symptoms of Addison's disease appear quickly and are severe. This could happen when you're already experiencing initial symptoms or without any symptoms at all.

Signs of an adrenal crisis include:

• severe dehydration
• pale, cold, clammy skin
• sweating
• rapid, shallow breathing
• dizziness
• low blood pressure (hypotension)
• severe vomiting and diarrhoea
• abdominal pain or pain in the side
• fatigue and severe muscle weakness
• headache
• severe drowsiness or loss of consciousness

An adrenal crisis is a medical emergency. If left untreated, it can be fatal.
If you think you or someone you know with Addison's disease is having an adrenal crisis, they will need a hydrocortisone injection immediately, either injected by themselves or by a person who is with them.

Then call 999 for an ambulance, saying it's an "adrenal crisis" or "Addisonian crisis".
......
Have you told the medics you spoke to about the salt?
How's DD now?

This is absolutely correct. I am very concerned for your daughter. If she vomits, passes out or becomes weak, confused or incoherent please get her to hospital and tell them that you suspect adrenal crisis. You can’t mess around with it.

Can I add whilst dark patches are a 'classic' symptom, many don't actually get them.

That’s scary to read as she fits it all but I don’t understand how it happens, I’ve not heard of this in either side of her family only diabetes and thyroid problems ☹️ she seems ok at the moment just saying she is all woozy all the time.

Are you going to take her to A&E and explain that it could be an Addisons crisis?

She needs to be in A&E now. Call a taxi or ambulance if you cannot get her there yourself. I believe it is urgent for right now.

Diabetes, thyroid problems and Addison can all be auto-immune disorders, where your immune system mis-fires and attacks part of your own body. I have a relative with Addisons and immediately thought of that when I read the salt bit. Please get her to the hospital urgently, we nearly lost my relative before her diagnosis.

It’s not hereditary. Just take her in.

Agree with pps re Addison’s. I hope you get sorted.

Hope you figure it out x

There doesn’t have to be a family history - I’m the only one in my family with Addisons.

Just to reiterate what other posters are saying, this deterioration in her symptoms warrants A+E immediately.

I have Addison’s & other autoimmune disease. I keep reading this thread and feel quite panicky because it’s a mirror image of my own symptoms before diagnosis. PLEASE take her to the hospital. Diabetes, thyroid problems and Addison’s are linked. But this illness does not need to be genetic. We have a remembrance group that post all those who die from the illness. We don’t want your daughter to be added to its list.

Op, I'm not sure you're quite grasping how serious this could be, having the bloods this morning won't stop her going in to adrenal crisis if that's what this is, which does sound quite likely given what you've said.

Gosh hope everything is ok

How is that helpful?

I would also echo taking her to A&E. I nearly died before I was diagnosed with Addisons via A&E. All of her symptoms seem to fall under Addisons.

@Lilolilibet can you really not work out how that comment is helpful? 🤯

OP not sure of the reasons behind your reluctance to get her seen. It's uncomfortable reading.

My friend has Addisons disease, nearly died because of it.
However, she's carefully medicated and is now a triathlete, even competing in Iron Mans around the world. it's nowhere near as life limiting as it used to be as more is known now.

However, i would be pushing for the tests to rule it out! Adrenal Crisis is scary and i've had to inject my friend and await an ambulance on a couple of occasions.

I’d say it’s extremely damn helpful if it makes OP take her daughter to hospital and prevents her death 🙄