Yellow fluff balls in vision

[Flossie44]

Dd has a lot of endocrine issues (pituitary, adrenal and hyperparathyroid)

She’s had increasing headaches recently. The last few days she’s complained of fluffy balls of yellow in her field of vision.

Should I be concerned?? Any ideas what this could be??

How old is she?

Start off with a full eye exam to rule out any pathology.
If all okay it could be migraine related.

You should certainly get her vision checked - what kind of pituitary issues? My son had a pituitary tumour, and that messed with his visual field.

She’s got growth hormone insufficiency. Plus adrenal insufficiency. (So has growth hormone injections and cortisol 4x a day). I was concerned about pituitary tumour but am not totally clued up on the symptoms??
How is your son now? Sounds like you’ve had a rough ride. Hope all is well

My son is 9, on GH and has secondary AI also. It was a long road to diagnosis but his visual problems kicked off the investigations.

How was your daughter diagnosed? Presumably she had an mri? How long ago was she diagnosed?
My son was diagnosed at 3...

Wow!! So similar!!!!!

So dd is 11. She was diagnosed with secondary AI aged 2.5yrs. They blamed steroid use (prednisalone daily) as being the cause.
When she was about 8 she stopped growing. But the steroids had made her put on so much weight. She was unrecognisable very quickly. She had an insulin tolerance test and found to have negligible GH. So went onto injections. She then had a basic mri. Apparently it was fine. Although she’s under 8 consultants nationally. One of those consultants has remarked that it wasn’t normal findings. I’ve tried since to get it reviewed but everyone else says it was fine.

She has had double vision on and off for some time. Headaches have become more persistent. And now these yellow fluff balls have appeared.

We are seeing the GP this pm.

Thanks for your reply

Can I ask the process of diagnosis your son went through?

At this point I would want - demand- another MRI.
My son’s first MRI was misreported ‘normal’ because the tumour was small. It was a year later, after worsening symptoms that he had a second MRI. He had nystagmus and a head shake (but the drs refused to admit that had anything to do with the tumour anyway). He had a craniopharyngioma. He had surgery and then proton beam therapy.

Steroid use would explain the AI but not her growth problems. It doesn’t sound as though the drs have come to a convincing conclusion here and I would be minded to double check an MRI to rule out something sinister.

Other symptoms to watch for: insatiable hunger, excessive thirst/frequent urination.

Thank you so much. Your poor son. And what a fight to get an answer. It really does impact on the whole scenario doesn’t it. Dd is so complex and everything seems such a fight.
Brain mri no2 is next week.

He’s doing so well now, so long as he remains as well as he has been I’ll be happy. You know it’s a lot for them to deal with - medication and tests etc.
I’m pleased your daughter is having an mri next week - it’s wise to be on the safe side.
If you haven’t already discussed it I would ask about puberty too & whether she is likely to go into puberty spontaneously.
Will be thinking of you and your girl - let me know how she gets on.

Thank you so much. Yes they are monitoring puberty currently.
It’s so much for them. Dd has been through so much already..9years so far. We just want to know a definitive cause. She has a lot of Neuro muscular issues too and struggles physically.
So glad your ds is doing well. Sending you much love. Thanks so much for your messages x

Feel free to PM me - these things are so complex no matter the cause. Take care.